A Patient's Journey: Celebrity Revelation Stirs the Pot

Ben Stiller says PSA testing saved his life. Did it really?

Howard Wolinsky, a journalist based in the Chicago area, was diagnosed with early prostate cancer in 2010 and chose an active surveillance management strategy. In an ongoing series of articles for MedPage Today, he describes how he came to that decision and his experiences since. In this latest installment, Wolinsky reacts to a recent essay by Ben Stiller describing his own diagnosis of prostate cancer at the age of 48 and his decision to have active treatment, which stirred up lots of discussion on social media and elsewhere about what Stiller said about PSA testing.

About 30 years ago when I had a writing gig with Physicians Weekly, I often wrote a feature called "Point/Counterpoint," two authoritative doctors presenting conflicting viewpoints. For example, I might ask back then whether prostate cancer patients ought to follow "watchful waiting" protocols, whether interventional radiologists or interventional cardiologists ought to perform certain procedures, and on and on.

It was fun. It also was lucrative because there is an endless supply of these controversies in medicine.

Medicine still has no shortage of Point/Counterpoint debates.

The latest involves actor Ben Stiller, who wrote poignantly inMedium about his decision to undergo a prostatectomy at age 48 after having been diagnosed with a tumor with a Gleason 3+4 score. His article celebrates being cancer-free 2 years after his surgery.

As a prostate cancer patient myself (Gleason 6 diagnosed in 2010 at age 63; on active surveillance), this debate feels a bit different than those I wrote about as a freelancer cashing in on medical controversies. It hits close to home.

What We Know versus What We Don't Know

So far, whatever Stiller's intent, the Ben effect has stirred up the ongoing debate over PSA testing:

Should it be done at all?

If so, at what age?

Would there be too many false positives?

Is screening worth the money?

Can Gleason patients with 3+4 , a less scary diagnosis of 7, safely follow an active surveillance protocol?

There's a lot we don't know about the Stiller case: What was his PSA level? Was his 3+4 based on cores from a biopsy? How many cores were affected? Or was his 3+4 score based on a presurgical biopsy on a postsurgical test of his entire prostate?

I reached out to Stiller's people. But Kelly Groves, a spokeswoman public relations agency which represents him, said Stiller would not be available: "Ben is headed back to production in Canada, so no plans for interviews for now, but feel free to share his Medium article!"

All we know about Stiller's cancer is from the Medium article and Stiller's appearance on Howard Stern's show on SiriusXM satellite radio.

(In typical fashion, Stern questioned Stiller about whether he got a last shot at sex before surgery and also how his sex life is now. Fair questions. The answers are yes and different.)

Stiller wrote in Medium: "Taking the PSA test saved my life. Literally. That's why I am writing this now. There has been a lot of controversy over the test in the last few years. Articles and op-eds on whether it is safe, studies that seem to be interpreted in many different ways, and debates about whether men should take it all."

He stressed: "I am not offering a scientific point of view here, just a personal one, based on my experience."

How did Stiller happen upon this information at the relatively tender age of 48? Most men, if they have a PSA at all, won't start until age 50 or older, as I did.

"The bottom line for me: I was lucky enough to have a doctor who gave me what they call a 'baseline' PSA test when I was about 46," said Stiller. "I have no history of prostate cancer in my family and I am not in the high-risk group, being neither -- to the best of my knowledge -- of African or Scandinavian ancestry. I had no symptoms."

Stiller said his internist continued with testing him every 6 months to monitor his increasing PSA level. This testing ultimately led to the cancer diagnosis in June 2014.

Not surprisingly, Stiller was stunned. He turned to Google to find what he could about prostate cancer.

"As I learned more about my disease (one of the key learnings is not to Google 'people who died of prostate cancer' immediately after being diagnosed with prostate cancer), I was able to wrap my head around the fact that I was incredibly fortunate. Fortunate because my cancer was detected early enough to treat. And also because my internist [Bernard Kruger, MD] gave me a test he didn't have to," he said.

Stiller also conducted a peer review. He called his movie father-in-law in the Focker series, Robert De Niro, a prostate cancer survivor, for advice. De Niro referred Stiller to his real-life urologist, Edward Schaeffer, MD, PhD, of Northwestern University's Department of Urology.

Stiller laid out the concerns about PSA testing: "The criticism of the test is that depending on how they interpret the data, doctors can send patients for further tests like the MRI and the more invasive biopsy, when not needed. Physicians can find low-risk cancers that are not life-threatening, especially to older patients. In some cases, men with this type of cancer get 'over-treatment' like radiation or surgery, resulting in side effects such as impotence or incontinence. Obviously this is not good; however, it's all in the purview of the doctor treating the patient.

"But without this PSA test itself, or any screening procedure at all, how are doctors going to detect asymptomatic cases like mine, before the cancer has spread and metastasized throughout one's body rendering it incurable?"

Saved by a "Thoughtful Internist"

Stiller advocates early screening with advice and consent of a family physician.

He wrote: "What I had -- and I'm healthy today because of it -- was a thoughtful internist who felt like I was around the age to start checking my PSA level, and discussed it with me."

If he had waited, as the American Cancer Society recommends, until he was 50, he said he would not have known he had a growing tumor until 2 years after he was treated, and if he followed the U.S. Preventive Services Task Force guidelines he would not have been tested until "it was way too late to treat successfully."

Sound like a slap at the ACS and the USPSTF? Keep reading.

Gerald Chodak, MD, is a retired University of Chicago urologist and author of "Winning the Battle Against Prostate Cancer: Get The Treatment That's Right For You." I regularly interviewed Chodak in the 1980's when my prostate was probably the size of a chestnut.

Chodak said Stiller missed the mark and worried the article could cause harm.

"Every person who had a cancer discovered by the PSA thinks their life was saved. Tell the 2 million men who were diagnosed and treated unnecessarily since PSA was discovered," Chodak said. "My fear is that other men his age will start the process and end up with lots of biopsies and treatment without our ever knowing the real impact on mortality. But it is good business."

I then contacted both Otis Brawley, MD, the outspoken chief medical officer at the ACS, and Schaeffer, Stiller's surgeon.

Point/Counterpoint Redux

Brawley is concerned about the impact of the celebrities comments on a medical controversy: "I'm grateful to Mr. Stiller [for saying], 'This is just me.' ... but the fact is that there are some people who will listen to an anecdote of one, whereas those of us are epidemiologists who specialize in screening, we have to look at the broad, full picture."

He said large-scale PSA screening of men in their 40s would result in a significant number of false positives.

"The unfortunate thing is, with this very high number of false positives you'll end up having to do a lot of biopsies of the prostate. And, biopsy of the prostate has co-morbidities associated with it. About 3 to 5% have fever nowadays. There is a group of men who end up being hospitalized for sepsis," Brawley said. "Just as Mr. Stiller says, 'I got a test. I was biopsied, found to have cancer and surgery saved my life.' I can introduce you to the widow of someone who got a biopsy and died from it. And guess what? He didn't have cancer."

Chodak and Brawley, especially Brawley, were getting under Schaeffer's skin.

"What Chodak and other state are accurate facts," he said.

But he added: "It's a shared decision-making process between individual men and their physicians. What would be the alternative? To do nothing? We know that if you do no screening, more people will die of prostate cancer."

Schaeffer said the take-home message from Stiller's article is that the decision to screen should be part of informed decision-making, which the ACS supports. Stiller, to his mind, followed ACS guidelines in suggesting that every man should discuss his choices with his doctor.

A frustrated and angry Schaeffer added: "Why is one individual person [Stiller] being criticized by the CMO of the American Cancer Society for [following] what they recommend? I don't understand it. It's just a mystery to me."

He pointed to ACS web page which includes the admonition that men should talk with their doctors about PSA screening. "Yet [Brawley] says something completely different," he said. "This is a disservice to patients. It is very upsetting from a patient perspective. I have had many, many patients contact me, very confused about what's going on."

Brawley insists his views harmonize with ACS's.

Something else needs to be noted about Brawley and Schaeffer. They have history.

"A Gleason 6 today is better than it was 10 years ago. You have to be careful when you talk about a Gleason 7 because 3+4 -- Stiller's diagnosis -- and 4+3, are extremely different grades. You can't really lump [them] as one group.

"The 3+4's do better today than they used to. One issue is that maybe we should do active surveillance for 3+4, which is the better Gleason 7. That was something Dr. Brawley was intimating with Ben Stiller."

Epstein stressed we don't know if Stiller's 3+4 was a postsurgical score for the entire prostate or a score from a biopsy.

"We have done an unpublished study that shows if you have a Gleason 3+4 on a biopsy, even if you just have one or two cores, and your PSA is less than 10, everything looks good, you still have a 25% chance of having bad pathology after radical prostatectomy. Really bad," he said.

"If you had a crystal ball, and you could say that you had a pure 3+4 in your prostate, I would say maybe yes you could do active surveillance in some men. But we don't have that crystal ball. The imaging isn't perfect. You have to deal with what's on the biopsy.

"Even with a very limited 3+4 on biopsy and low PSA, I wouldn't feel comfortable doing active surveillance in a younger man. The man who may die within 10 years or who has a lot of co-morbidity, that's a different issue. But a younger man who has decades ahead of them, I think it's extremely risky."

In this scenario, you have a 75% chance of having cancer that is not aggressive. But could you live with a one in four chance of having aggressive cancer?

Personally, if I was my late 40s, or even 60s or 70s, I don't think I could. I'd opt for definitive treatment, such as a radical prostatectomy. I wouldn't be an active surveillance hero.

I think Team Stiller made the right choice. But I am only a prostate cancer patient and a journalist.

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